Narcolepsy Support Group

True Cheri-even for me I remember when I told my doctor that my family members were concerned he asked who was concerned and what they were saying. Now I have a good relationship with my doctor but i think it does get there attention when there are reports that other people there are other people who bare witness to your concerns.

Maybe I should take my mother along again. Last time she just came for moral support and didn't say a lot, but she's only begun to realise there's a problem over thelat 5 years, but now she can predict (accurately) when I'm at my sleepiest. She says my lips suddenly go very pale.

Otherwise over the last few years as I've got worse I've let friends drift. Just not got the energy at all. I keep in contact with most people by phone or online during my brief evening alert period.

On Monday I went back to the Dr after some blood tests for a strange incident I've always put down to blood sugar. The world sort of wobbles, goes really bright and then my arms and legs refuse to cooperate. Anyway, as usual all tests were negative (the sameset of tests I've had so many times before) and although the doctor (a new Dr, again!) offered to look at my notes and call me he was quite dismissive (it doesn't happen often, you don't need to walk, you could get a bus!)

The reason I'm posting this here is that this happened before at the beginning of the year at the practice. I took my mother with me for support and the (new) Dr I saw then offered to look at my notes in detail, chat with colleagues and see what he could come up with. Deja vu?

Anyway, Monday night I met my parents who've just moved round the corner and went for a drink. A couple of nights before I'd had another hallucination, something that my Dad has always been amused at my phobia of. He jokingly siad "but they're just lizards that don't wear legs". I find the word hard to say, so that's what I call them. Anyway, I woke up within half an hour of sleeping with a lizard that doesn't wear legs sitting on my pillow. I don't remember feeling the revulsion I normally feel when I think of these creatures (It's not fear, more.. can't describe it).

This is a round about way of saying that my parents completely dismissed all my health worries. They've done it before but i thought my mother was starting to see it. As they now live nearby they'll be round here a lot and will expect me to be awake and I just can't. So far I think they've only seen the version of methat tries hard to appear OK but I have to stop putting on an act. How can I? I i've been doing it since my teens. Trying to be strong and self sufficient. I don't want their pity but I would like their support. How do I negotiate that fine line?

Without a clear diagnosis I have this nightmare everywhere, with family, friends and work colleagues, my boyfriend even. . Drs don't get it. I can only work a couple of days a week and I'm dreading my one work day this week. I used to be able to resist sleep if a colleague was in the room. That stopped last week. I've had enough and need to o something to get somewhere..

It's not possible to diagnose narcolepsy by just a blood test. They can do blood tests to see if you have inherited a genetic susceptibility to narcolepsy, but it's not proof that you've actually developed it. People without the genetic susceptibility to narcolepsy also get it.

They can take a lumbar puncture and test your spinal fluid for hypocretin levels, which is not a pleasant experience I might add. I think the only definitive way of knowing for sure is an over night sleep study where they monitor your brain activity and vital stats and the MSLT tests. It's probably a combination of both actually but I'd opt for the sleep test over the lumbar puncture any day.

You won't know what's really going on until you get a sleep test done. If your doctors won't play ball do as I said and contact one of the sleep centres directly, ask for advice.

A lot of us have experienced the people not believing routine. It's a day to day annoyance. I don't think you should hide it from your parents, you're not doing yourself any favours.

Update - I was so tired at work that I burst into tears (when asked if I could extend my hours) and was sent home. My colleagues pushed me into demanding a second opinion. This was 3 weeks ago. I took my list of symptoms.

My doctor insisted on writing to the apnoea specialist (who is on holiday) first but says he will write to another sleep specialist. I went back to the GP and saw another doctor who said that the sleep Dr will insist on this. Why does it have to take so long?

I live in the UK and can unfortunately say that it took years for me to be finally diagnosed with N. By that time I would have been grateful for a diagnosis of Brain Gangrene - anything just so I knew it wasn't me just being lazy or going mad.
The hallucinations I had (and sometimes still do even with meds) were awful. I remember running someone over that wasn't there but I saw her touch the car and everything. During a driving lesson years ago I even stopped at a crossing to let a lady with a pram and dogs cross, I was sooooo embarrassed when the instructor said there was no one there - I felt so spaced out.

Anyways the doc took years to diagnose this. He told me to go on holidays and see if that worked, regulate my sleeping (like that's going to work) and loads of other helpful, productive (not!) suggestions.
Finally got the diagnosis 1 year after the dodgy sleep test and now, 7 years after diagnosis, I'm struggling with my meds and hoping to get them sorted.

My only advice at your stage could be to stick with it and be persistent. I know how easy it would be to just give up but you cannot carry on without a diagnosis of some description.
Whether or not you have Narcolepsy I do not know but it certainly sounds as though you have some kind of Neurological condition. Although, your lips suddenly going Blue is more a circulatory problem I'd have thought but hey, I'm no expert and there could be many other symptoms of Narcolepsy that aren't suggested just because they aren't as common.
When you try to stay awake what happens? People with Narcolepsy can be stimulated to stay awake in certain circumstances (this is one reason why so many dodgy sleep tests are failed). What would happen to me though if I fought the sleepiness would be that within a half hour or so I'd be acting drunk. My speech would slur, I'd be incoherent and I'd feel drunk. In fact at one point I asked a restaraunt waiter what they were pumping through the air ducts as I honestly believed I was drugged.
Do you have any of those kind of things happen?


Stick with it and good luck. Use this forum as much as you can - it does help, even if it's just to have a whinge.